The short story - I'm in either near or complete remission (this is where everyone stands up, raises their beer and says cheers! Please do so now.) From a regular blood test you wouldn't be able to tell that I have Multiple Myeloma. If you do a bit further research, you'd see that there is a trace of the disease but only a trace. So to keep that trace I will most likely go onto a regimen of Revlimid (21 days on, 7 days off) in the near future. And I will maintain that regimen until the numbers start to change. Should there be a change, I'll go back on the original chemo routine (RVD) for four cycles and then back onto the maintenance program. The additional good news is my genetic profile (cytogenetics) is such that the potential exists I may not have to do a transplant. That is really good news (again, raise the beer please!)
The bad news is my feet are killing me! Firstly, the Cytoxan was given to me with a card (you saw the picture in a previous post) warning me of everything that could happen. I was then told that the full effect would occur in approximately 8 days. I was not warned that in a fortnight, the alopecia they warned me about, would then kick in. Once I enquired of other chemo patients they all told me it takes about two weeks. Why couldn't someone have warned me?!? I had thought I was safe from the clippers! But the bald head, which everyone has clearly pointed out, "...looks good on you...", is something with which I can deal. The feet - that's another matter. But again, nobody seemed to clue in on the fact that what's happening with my feet is neuropathy (except my wife!) DFCI definitely believed it to be neuropathy and suggested a few things (detailed below). I can't say they're working well but I did sleep more Thursday night than in the last two weeks!
For now, I am in a good spot. If I can get rid of the neuropathy then I'll feel somewhat normal (chillier upstairs but normal all the same). I am also going to investigate creating another blog page off this one that simply outlines the various drugs I've taken and the reactions from each so that anyone else who has Multiple Myeloma has a simple resource guide! If you're in this for the short ride you can leave now - the rest is details on what the docs at DFCI told me at my visit.
First - the numbers - I've not gotten everything back yet (IGA and FLC) but the basics show everything else is pretty normal. Blood counts were low across the board but just below the normal ranking. Globulin, TotProtein, Calcium were all normal so everything looks good.
Second - the doc is recommending I go on Zometa, monthly, for the next two years. Where the docs at SVCCC were all saying the amount of zometa I was receiving was the same as most people would get in one year, DFCI had a different thought process. As a reminder, zometa is a bisphosphonate (everyone clear now?) and it's used as a bone strengthener that is usually associated with osteoporosis or other bone disorders (normally associated with older people). DFCI is saying it's not the amount of zometa that is stored in the bones (to strengthen and support) but the action of the zometa getting to the bones that is important. This step, the transport of the zometa to the bone, supposedly blocks the myeloma from getting to the bones, according to DFCI.
Third - post harvest strategy, as also mentioned by SVCCC, will be Rev maintenance program (as mentioned above). This will also include some Dex (steroid) but there's a concern if the dex goes beyond six months. If I remain in CR or near CR then we will maintain the Rev maintenance program.
Fourth - if there's an increase in my M-spike (i can't explain that one - bottom line, it identifies a protein spike specific to the iga, igg, igm lines.) or if I step out of CR then DFCI wants a consolidation of RVD for four cycles and then back to rev maintenance. DFCI's studies, for persons with the cytogenetic profile like mine, were all built around two rounds of RVD so this is right in line w/ the protocols they've already tested.
Fifth - for the neuropathy he provided a script for Lyrica. The wonderful thing about Lyrica is it could: make me high, make me sleepy, make me not sleepy (seriously, one page says sleepiness, the other says trouble sleeping), have suicidal thoughts (honest, it says that) and cause, and I quote, "new or worse irritability". So I may be come 'worse' of an irritable arse than I am right now! Additionally, he's recommended two items to assist with the neuropathy: Cocoa Butter and Olbas Oil. The Cocoa butter - real cocoa butter, has the same type of ingredients as real dark chocolate (the 80/90% cocoa chocolate) and the type of ingredients in the cocoa are beneficial to the nerve endings. I would warn, don't wear clogs - the cocoa butter, on your feet, makes for a slippery situation and your shoes will slip off! The Olbas Oil is a swiss made concoction of menthol, eucalyptus and camphor which is also designed to help. It's also a massage oil - perhaps I can convince my wife....wait - sorry, wrong blog! :)
So all is very good for now! I am still bald but at least the Lyrica is letting me sleep (not doing much in the daytime but will let me sleep at night). That's enough for now!
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